11-year-old shares her world of autism
"My name is Maleia and I am eleven years old," she wrote with a typewriter-like device on Oct. 2 in a piece titled "My Life With Autism." "I feel like other kids my age but my world is very different. I am forced to live in the world of autism. To me there is a gospel different from yours. Autism affects me both academically and personally."
Before Maleia (her name is pronounced MAH-LEE-AH) learned to type on a keyboard about a year and a half ago, her parents, Todd and Keri Darling of Barre, said they had no idea what went on in their daughter's head. They picked out what they thought she would like or need by trying to guess the desires of their sometimes expressionless child with big beautiful eyes and short blonde hair. short blonde hair. Once she began writing, her inner world came alive to them.
"We were blown away," said Todd Darling, who is a wholesale flower distributor. "We didn't know she knew what she knew (and) for me, it gave me a stronger will to help her get out of the world she was in."
Now, Maleia tells her parents what she thinks, feels, likes and dislikes. Her favorite colors are pink and yellow. She likes volcanoes. She likes riding on snowmobiles, roller coasters and other amusement park thrill rides.
"It's made us closer because we know how she feels," Keri Darling said. "Before, I made all the decisions. It's helped to get to know her more."
Autism is classified by the World Health Organization as a neurodevelopmental disorder. The condition affects a person's ability to communicate, understand spoken language and interact socially. Symptoms usually appear in the first three years and continue throughout life.
Maleia's medical problems started at nine months when she had a grand mal seizure. Keri Darling called emergency rescue and felt "helpless" and "clueless" as her tiny daughter was rushed to Dartmouth-Hitchcock Medical Center in Lebanon, N.H.
Doctors diagnosed Maleia with autism at age 3. Her parents cared for her as she endured seizures for days in a row, every hour on the hour, according to Keri Darling. The early years were "rough," Todd recalls. As Maleia matured, the duration and frequency of the seizures decreased, and though she had seizures as recently as last summer, the episodes have been regulated with medication.
The Darlings credit their own parents, extended family, the Barre Town School and the community for supporting them along the way.
Keri Darling, who works as a victim's advocate for the deaf, said the Barre Town school has been "awesome." The school board promised the Darlings the school would help Maleia with whatever she needed when she enrolled in kindergarten. Now in fifth grade, she works with a one-on-one aide, often in a room by herself, because it is difficult for her to be with groups of people.
Todd Darling said it was impossible to tell how much Maleia was taking in until Harvey Lavoy of the Barre Town School introduced her to "facilitated communication" last year.
In her case, someone holds her wrist or elbow in place so that she can access the keyboard of a computer or other writing device with her fingers. Maleia hits the keys on her own, Todd Darling says. Her writing is not edited by her parents or her teachers.
Maleia is reading and writing at a fifth grade level, and she has produced pages of sensitive, intelligent essays.
"Words, thoughts, hoards (sic) of emotions spin a riot in my head," Maleia wrote. "How can I speak or know drops of thoughts when there's an ocean in my head? ... How can I fit into a world forcing feelings I don't have?"
Her writing reveals a thoughtful person full of hopes and joys, even though on the outside she appears to be cut off from others.
The Darlings had no idea how their dedication touched their daughter until recently because Maleia only utters occasional single words to indicate what she wants, her father says. And while she can say many words, she's not able to string them together verbally in sentences, he says.
Maleia recently wrote, "My mom is pretty and smart. She loves me the way I am. She loves me as much as she loves (brother) Jake. I'm surprised that she loves me when I'm a devil. I love her, too, and I'm so really happy that she's my mom."
Maleia also wrote a letter called "My Special Place" to her grandmother: "Roots of love, rays of happiness, torch of hope, these are the things that touch me when I am at Mimi's house. Mimi's house is truly peaceful She's always a fountain of love for me and filled with real hope that I am smart and really lovely." Kay Lamberti, Maleia's grandmother, said she cried when she read this letter.
Her parents are amazed how simple communication devices, such as portable electronic keyboards, have opened Maleia's world.
Knowing her preferences has allowed the Darlings to provide an enriching environment at home. Her bedroom has become a soothing retreat decorated in her favorite colors with soft lights. On a recent Sunday afternoon Bob Marley's rhythmically lilting reggae music filled the air as Maleia swung on a swing in her bedroom. Todd Darling explained Maleia puts on music and swings every day when she gets home from school to unwind from the daily stress. Autistic children need certain kinds of physical stimuli other children don't, according to Keri Darling. In the summer, she swims in their backyard pool.
Maleia's seemingly miraculous discovery of the written word has inspired her uncle, Randy Lamberti, to join with Sue LaGue of Berlin, a grandmother of an autistic child, to raise money help families like the Darlings purchase equipment for their loved ones.
"We wanted to do something to raise awareness," Lamberti said. "It is a disease that gets one in every 166 children."
Lamberti and LaGue formed the Autism Puzzle Foundation to serve people statewide in need of toys or devices to enrich their lives. They held a fund-raiser at the Barre Elks Club last April, which raised nearly $21,000. Of that, $10,000 was given to Cure Autism Now (www.cureautismnow.org), a research organization that is offering to pay for devices that can people with autism.
Families throughout Vermont are invited to contact the Vermont Assistive Technology program about the Autism Puzzle Foundation gifts of up to $500 for therapy swings, facilitated communication equipment and other alternative communication devices. Funds are also available for toys that help with sensory integration, fine motor skills, gross motor skills, tactile skills and cognition skills.
"We're trying to help Vermonters statewide," Lamberti said. "There's a huge need."
And now, thanks to help from family, teachers and others, Maleia can speak for herself about how important these devices are to those with autism.
"I want to tell people how much my life has changed with typing," Maleia wrote. "Typing is my voice and my right hand is my life. Before typing I had little way to tell people my needs and feelings."
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